One aspect of high BMI pregnancy I know need to address more is pre-conception care and fertility treatment. Particularly why is IVF access in the UK almost impossible with a high BMI?
Last year Nicola Salmon wrote a post for us about Rebel Wilson’s disclosures about fertility treatment. Today I’m delighted to report we have a new guest blogger. Introducing Manna Mostaghim, a PhD Candidate in the Health Policy Department at the London School of Economics and Political Science:
Her PhD thesis is on the provision of publicly subsidised IVF for women with a high BMI in the U.K. She explains the origins of the restriction here:
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The ‘unjustified extrapolation’ of NICE Clinical Guidance 156
Fat people face discrimination accessing IVF services in the UK. This is because people deemed to have a high BMI have restricted access to IVF services within the NHS and across most private clinics in the UK.
The primary justification of this restriction is from the NICE Guidelines the ‘Fertility problems: assessment and treatment – Clinical guideline [CG156]’ (‘NICE Guidelines’). The NICE Guidelines set out that the ideal range of BMI for a woman or birthing person seeking IVF services is 19-30. But in the implementation of the NICE Guidelines across the UK, the vast majority of publicly subsidised IVF has an absolute restriction to IVF access for any woman with a BMI over 30.
Women, trans men, and non-binary people who are pursuing conception are disproportionately impacted by BMI restrictions to IVF services. Some clinics also place restrictions on the BMI of the individual providing sperm in the commission of IVF services. For example, a quarter of NHS IVF clinics require that the “a maximum male BMI”, has a BMI ranging from “between 19km/m² and 35km/m²”.
The NICE Guidelines
The recommendations of the NICE guidelines for plus-size patients did not intend to be prescriptive in its application; nor, was it intended to restrict access to IVF. Instead the NICE guidelines state that healthcare practitioners (HCPs) should only ‘inform’ women and men with a high BMI that weight loss could help with fertility. However, a restriction to providing IVF services to patients with a high BMI has been implemented in the IVF eligibility criterions of 96% of NHS health boards and trusts in the UK.
But as a Fertility Fairness Audit in 2018 articulated, “BMI [is] not in the NICE guidance as criteria for IVF and there is no strong evidence of [a high BMI’s] impact on clinical outcomes of IVF…. Commissioners are making unjustified extrapolation in using [NICE Guidelines] for rationing [IVF services]”. But the NHS also states that “individual NHS [eligibility criterions determine] the final decision about who can have NHS-funded IVF in their local area, and their criteria may be stricter than those recommended by NICE”.
Is there scientific evidence to support IVF restrictions for people with a high BMI?
Restrictions on an individual’s access to IVF due to a high BMI is attributed to evidence that women who are obese or overweight have a lesser rate of success with IVF; and, have higher rates of complications in pregnancy and labour. Systematic reviews consistently find that fertility is impacted by a high BMI – but it remains an area of continued controversy and further research. For example, data that links a high BMI to a lack of desired outcomes in IVF have not “adjust[ed] for key cofounders such as age” or the prevalence of fertility conditions in specific ethnic groups.
Is it cost effective to support IVF restrictions for people with a high BMI?
Brown speculates that publicly subsidised IVF services may be subject to funding restrictions for those with a high BMI because “both fertility treatment and obese people may be publicly unpopular”. However, IVF is also expensive and, in most cases, not successful. As a result, IVF clinics justify restrictions to IVF by claims that they are ensuring funds and resources are allocated to individuals who are predicted to have the best chance of success.
But badly commissioned fertility treatments are not cost-effective because they create more of an economic burden for the UK’s health system in the long run. This is because the UK’s Human Fertilisation and Embryology Authority (HFEA) notes the highly emotive nature of fertility care requires especial care and attention to the mental as physical wellbeing of the individual seeking care. For example, comprehensive mental health services may be needed for couples or individuals who experience long-term infertility – a cost which would ultimately be borne by the NHS.
Is the current implementation of CG156 working and justified?
The NICE Guidelines are referenced in eligibility criterions as the basis of the restriction – even though the Guidelines did not intend to restrict access to IVF for women or other people who trying to become pregnant with a high BMI. And the identified justifications used as a basis to draft an eligibility criterion to determine the commission of publicly subsidised IVF for larger patients are subject to debate and controversy.
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Thanks Manna! If you’d like to follow her on Twitter click here!
So we know why. What do we do now?
Numerous studies show that the vast majority of intentional weight loss is unsuccessful long term. It’s not new news! Studies go back as far as this one in 1991 and beyond!:
We also know that achieving long term weight loss does not necessarily equate to healthy behaviours. Moreover, recent research published in January 2022 has shown that weight loss may not help fertility either:
Yet realistically, if you don’t have funds to pursue private IVF, your only NHS option is to lose weight.
So as you attempt to placate the NHS doorkeepers, despite it having no demonstrable benefit to your fertility, very little demonstrable benefit long term on your health, and may result in you rebounding to a higher weight than ever before, all while you’re getting older and less fertile, and probably resulting in your being ruddy miserable throughout the process, potentially affecting your relationships, your career, and your underlying mental health… How do we get beyond this?
NHS processes change inexorably slowly. I literally think the only options are to campaign and hope in time that NICE changes its guideline. While the guideline as it stands doesn’t represent how Trusts are choosing to apply it, NICE could make it more clear that IVF should not be restricted on basis of BMI?
Alternatively, someone with big pockets to pay for lawyers could take their local Trust to court over the lack of access?
Money Money Money?
But, if you’ve got the cash for lawyers… Is IVF access in the UK almost impossible with a high BMI if you can afford private treatment? Success in court would take ages, cost a bomb, and is far from guaranteed.
No-one is going to sue their NHS Trust for access to free treatment, when the cost of treatment privately would be substantially less than the court battle. It would take a class action, probably, and even then has probably a low chance of success. And so, as with almost everything, if you’re cash strapped, you’re screwed. But not then pregnant.
Before you think that winning the lottery would solve everything, the shocking truth is that in the UK, even if you can afford to go private, BMI is still an issue. As of April this year, the last independent clinics inclusive to higher BMI clients in the UK introduced upper limits for treatment. Even people who don’t have the additional BMI hurdle report that private treatment in the UK can be frustratingly slow.
So, the options if you need IVF and you have a high BMI shrink further still. Where does that leave us?
Medical Tourism?
The term ‘medical tourism’ refers to those tourists who have chosen to have medical/surgical/dental treatment abroad. Cosmetic surgery, dental procedures and cardiac surgery are the most common procedures undertaken by medical tourists, but people do travel overseas for IVF too.
Many more couples are choosing to travel overseas for fertility treatment, and not just because of BMI thresholds.
Aside from the cost implications which are often substantially lower than treatment in the UK, particularly in Europe, even when taking flights and accommodation into account, different rules and protocols in other countries may make the process easier and waiting times shorter. However language barriers, lack of aftercare, and concerns about regulation and safety may make the process more daunting.
What are the risks?
The Guardian article above quotes Infertility Network UK’s chief executive. She sympathises with those desperate to access treatment, but counsels caution.
We understand that couples feel this is their only chance, but clinics abroad are not as regulated as they are in the UK. The tests, the donors, the screening are not always as rigorous, and it is done like that here for a reason. Many do not offer counselling, which couples might require. It’s when IVF fails that couples really need it. When it is over and you fly home, you are on your own.
Clare Brown, Infertility Network UK
The Human Fertilisation and Embryology Authority is similarly cautious:
The UK’s approach has been achieved through consensus among patients, clinicians and the wider public and it continues to command confidence throughout the world. Beyond the UK, patients do not have the same guarantees and without independent regulation, real risks can be taken unknowingly
Angela McNab, HFEA chief executive
Here’s what the Foreign and Commonwealth Office have to say about Medical Tourism to Turkey:
The standard of medical facilities and available treatments vary widely around the world. As such, British nationals considering undertaking medical treatment in Turkey should carry out their own research; it is unwise to rely upon private companies that have a financial interest in arranging your medical treatment abroad. We are aware of 18 British nationals who have died in Turkey since January 2019 following medical tourism visits.
Foreign and Commonwealth Office Travel Advice re Turkey
So that’s not very reassuring! Most of the scary stories, particularly involving Turkey, seem to focus on cosmetic surgery. At least, I can’t find anything about ‘botched IVF’ or similar. But worryingly some cosmetic surgery clinics offer IVF treatments – which doesn’t sound to me like a related field of expertise. Surely fertility treatment is the preserve of a specialist clinic? You want to know they’re genuine!
It’s shocking to me that the current system is literally pushing people who are trying but struggling to conceive to supposedly inferior ‘less regulated’ medical markets abroad, with any fallout inevitably being picked up by the NHS.
Why preach caution when there are so few options?
It’s all very well for the HFEA and Infertility Network UK to preach caution. But as we’ve explored, if you’re in a bigger body and need IVF, you have few options in the UK.
If you are considering treatment abroad, you really want to be doing your homework. While places like Turkey may offer tempting cut-price deals, staying within the EU, US, or Canada, with their more highly regulated medical industries is more likely to be safer. Get as much information about the clinic as you can before making travel arrangements. Potentially even have a consultation over zoom first before committing to travelling? Work out what questions you want answered beforehand and write them down. Genuine clinics should be registered with local bodies, and ideally report success rates with independent assessors. Search for them online in order to try to uncover negative reviews – but remember, as with any other business, bad organisations change their name, so check the address and clinicians names too if you’re struggling. People from other countries may have used them too, the most telling reviews may not be in English! Consider joining a dedicated Facebook group (there are several!) for support and more information.
But the fact is, this is all ridiculous that it’s even necessary to contemplate such things! Withholding fertility treatment on the basis of BMI has a poor evidence base and was never the intention of the NICE Guideline. While I generally try to find the positives in a situation, in this case, if you’re in the UK, struggling to conceive and need IVF, it sucks to be fat. That’s not OK, and it needs to change.